Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright
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Tuesday, January 18, 2011

My Journal - Week 74 (18Jan11)

Future or Present?  
A blood test that can Diagnose Down syndrome.... 
Good news or Bad???

Some of you may be aware of the talks regarding the newest and latest testing for Down syndrome which will be part of the new prenatal testing sometime in our near future.  The new method of prenatal testing to genetically test for Down syndrome will eventually be conducted by a simple blood test of a pregnant woman.  This testing is not the same as the current maternal serum screening or blood tests available now which check various hormone levels, alpha fetoprotein etc. in the triple, quad screen and IPS (Integrated prenatal screening) that give doctors an idea of whether there is risk or possible risk for Down syndrome.  This new blood test will definitively tell doctors (or geneticists) if a fetus has Down syndrome with the same accuracy as an Amniocentesis or CVS procedure.  The only difference is that this test is not invasive and will not carry the same known risk for loss (albeit small, less then 1/2 a percent) as Amniocentesis or CVS are known to have.  The reason I am posting about this new procedure is because I was asked to participate and be involved in the study of this new blood testing procedure to identify Down syndrome by my genetics clinic.  This request took place when I went in for my recent Amniocentesis on the 6th of January for my current pregnancy.

Now, I had many many questions to ask the doctor involved in running the study and she answered everything that she could.  The obvious question of when the testing will officially be available here in Canada was not told to me but she did mention that science has literally already allowed them to identify what to test for by way of blood, and so it occurred to me that they (genetics) probably already can identify a "Down syndrome pregnancy" but are "fine tuning" the procedure and also the political side to the test such as who will be eligible to get the test, who will be able to request it (since it is a "simple" blood test), where it will be processed, and most importantly, who will pay for it - since the one thing that this doctor did advise me on was that the actual procedure for the analysis of the blood - is/will be a very costly testing procedure.

One thing about me, I am very pro medical science and the involvement to move it forward.  So, knowing that, I wanted very much to participate BUT there was one issue that immediately came to my mind which nearly derailed me from participating in the study.    The study only would require three vials of my blood which would be compared with my results from my Amniocentesis procedure sample taken.  (They would not take any additional amniotic fluid, only my blood sample was required for the study.)  My issue was not a sceptical one, it was not a fear of my DNA or identity being misused, it wasn't a doubt of the science for this actual new testing procedure.  My issue surrounding my involvement in this study was an emotional concern.

I explained to this doctor that I understood currently, the statistic for termination of a fetus which was identified as having Down syndrome was 94%.  This means, of the babies born with Down syndrome as a pre-diagnosis - only 6% of them are born to parents who have knowledge that they have Down syndrome.  This statistic does not include babies born with Ds that are diagnosed at birth because no prenatal screening or testing was undertaken.  In other more realistic words, more then 95% of the time, when a woman (or family) learns via Amniocentesis or CVS that their unborn baby has Down syndrome, the decision to terminate is made.  Only 6% choose not to terminate and continue their pregnancy.  What I wondered as I contemplated being part of this new medical prenatal testing procedure was, would this blood test now make it unequivocally easier to make the decision to terminate?  From my perspective (confirmed through personal research and support), I know many women do not choose to undergo Amniocentesis for many reasons.  Some of those reasons are, but not limited to: fear of potential loss of a pregnancy due to the slight chance of miscarriage from invasive testing; fear of the test itself (needles); inadequate or lack of prenatal testing altogether; or fear of an absolute answer or negative diagnosis; then there is the reality of availability (world wide); cost or inability to afford an amniocentesis; or even knowledge that the test exists.  Knowing this, it's obvious many babies born with Ds are born to parents who had absolutely no idea that their baby even had Ds or that there was even a remote possibility that the baby had Ds.  I challenged the doctor with my theory that - since this is true in many cases (which then account for the thousands of babies born locally and around the world every year with Down syndrome) outside of the lonely and sad statistic of the chosen 6%, are we (rightfully?) giving people an easier way to decide to terminate pregnancies that are diagnosed as positive for Down syndrome?  While the obvious answer from the doctor was "yes", it will be easier to get a diagnosis, we can't change the decisions that people will make or suspect that people will make the decision to terminate.  But I disagree with her entire answer.  She is correct, the new blood test itself wont change the decisions people make, but given the data, it is obvious that it will be easier to make that decision.  Let me be clear, I believe everyone has the right to decide about continuing their pregnancy - it is also law.  But when I told the doctor that the test would simply allow MORE people to choose termination because the diagnosis would be easier to achieve (for all the reasons I listed above that stop people from getting (the currently available) definitive diagnosis via Amnio) she countered that there are services in place that would help to provide people with references and resources to help them make an informed decision.  My jaw dropped.  I explained that this is and was simply not true or was the case even currently!  She was under the impression that someone provided a couple with all the information about Down syndrome which might help them decide if they should choose to terminate.  Unfortunately, I learned this is not what happens.  The genetics counsellors are pretty quiet about educating people about Down syndrome.  It's debatable that all the information is anything more then clinical (text book information) and without being disrespectful to the genetics community here often the decision to educate the parents is left to the parent to ask for it, it wasn't offered.  More over it seems that the information that can be given is only imparted after they know whether or not you are terminating or continuing the pregnancy.  Which to me, defeats the purpose of making an informed decision!  I get that it makes absolutely no financial sense (for any government) to spend time, money and or resources educating a parent(s) if they don't seem or want to continue the pregnancy.  To the "bean counters", it's a waste of time/money.  They therefore don't offer the education etc. unless the decision to continue pregnancy is made.  And what about elsewhere - where counselling information isn't provided free, via health care, insurance or even available??  I guess they go without.

The doctor wasn't sure how to answer after that.  I further mentioned that if she believed that appropriate counselling occurred immediately after a diagnosis, (instead of assuming that everyone would choose termination, which we can see purely by statistic why this assumption is made) to help with decision making, my question was, how would this be achieved, controlled or monitored if the test was able to be requisitioned by a pregnant woman's family physician or walk in clinic?  After all, it will be a simple blood test.  She admitted that the final details of where or how this test will administered, sent to for analysis or who/where could give the results obtained, had not yet been determined or better yet, if they would even discuss those things.  (That wasn't her involvement in the study).  Personally, I don't feel comfortable assuming that they will ever iron out those details or issues because frankly statistically 6% of peoples emotional concern is not enough.  It's hard to argue that 6% matter if 94% normally choose termination.  Currently even the professionals in my medical world still use the term "Downs" and are so undereducated about Down syndrome that I shudder to think how that number of 94% termination will dramatically rise - if that's even possible.  That is the reality now.  94%, and that's currently after receiving the diagnosis from a "Genetics involved specialist" - since in North America most diagnoses for Ds are currently obtained through a genetics referred test - NOT a simple blood test.

So, at the end of the conversation what did I choose to do?  I participated, mostly for one major reason alone.  I, like the current 6% (who chose not to terminate after receiving a diagnosis of Down syndrome) wish that there was/were a less invasive way to get/confirm a diagnosis of Down syndrome with out risk or fear that I could be jeopardizing my pregnancy because the current (invasive) methods available do have potential risks for miscarriage - even if very slight.  It would make absolutely no sense for an advocate, who wants to see that more people out there know or learn that Down syndrome is NOT the scary, stereotypical, negative thing, others think it is - to want to keep a potentially harmful test around that could reduce babies with Ds by inflicting potential loss.  We want our children to flourish, not perish.

I suppose, ultimately the new test is bitter-sweet.  In future, I will have an option available to me that will be less risky (to be able to confirm a baby has Ds) but it ends up making it easier for the other 94+% to decide on termination.  Sadly, the doctor also advised me aside from being a participant in the process, I would not learn before the public when this does become a reality.  So, like everyone else, I will have to find out when it becomes a reality be reading the news.

2 comments:

  1. That is a ROUGH one. I can only imagine how rough it must have been to make that decision on the spot. I can't even guess what I would have done. I can tell you that 94+% statistic has always bugged me and I totally agree with your hypothesis that it will increase if definitive testing is quicker and easier. I don't know much at all about how the health care system in Canada works and, truthfully, I have pretty limited knowledge about it here in the States too. My personal experiences are the basis for my opinions. And since I didn't have a prenatal {or postnatal, for that matter, since Mari was adopted} of Ds I can't speak directly to that; HOWEVER, I can tell you it is disturbing how quickly and how often termination is offered as an option for ALL KINDS of things. I had two miscarriages prior to my two full-term pregnancies and can't imagine I would have ever made a decision to terminate but with BOTH of them at one point or another for differing reasons a doctor, nurse, ultrasound tech or whatever queried {suggested? implied? offered? whether I wanted to terminate. And don't get me wrong, my pregnancies were 5 years apart on completely opposite coasts of the US so it wasn't just a bad bunch of practioners...With my son, in 1997 in Washington state, is was the AFP test results that triggered it and the phone call from the doctors office was "there's a concern with the results; it could be a problem with the baby or as simple as a problem with the dates, we can redo the test or terminate." {Really? I can have another vial of blood drawn or I can terminate today? Let me think...} It turned out that my dates were off by just a few days and the test was run too early. With my middle daughter, in 2003 in Florida, there were a couple of "hot spots" on her ultrasound that could have realistically indicated a number of significant medical issues and I had to go in for a level 2 ultrasound and see a perinatologist and as I am laying on the table prepping for the level 2 the dr asks me, "so if I give you bad news today are you going to terminate?" {They must teach this abrupt and bizarre behavior in medical school} I looked at her like she was crazy and my husband said, "I don't think this is really the time to talk about this." We went on with the test and ended up with several more ultrasounds throughout the pregnancy and a very healthy little girl that June. All of this to say, I had two healthy pregnancies where termination was an issue. If the diagnosis is definitive I can only imagine what it would be like for the parents. I can imagine an atmosphere of pressure not of reassurance and education.

    As for the availability of education and resources, I didn't experience them from a prenatal or newborn perspective. I have sought out resources on my own ~ and found them, mind you ~ but it's not always easy to find good information. And since I was looking pre-emptively as we were preparing for our adoption and not trying desperately to find information after a diagnosis (and possibly in a state of shock or confusion or grief) I was able to quickly say "yeah, that's just not right" to some of the crazy stuff and horror stories that you can still find out there. I don't know, but I would guess it would be harder to do when you're dealing with the emotional reaction to an unexpected diagnosis.

    There are not enough resources to educate, that much is clear to me. So your jaw dropping reaction is shared by me. The problem is that medical science is looking to fine tune diagnoses without working to improve the state of parental education and quality of life for our children. The scales are VERY out of balance. It makes it easy to jump to the hysterical assumption that medical science is trying "get rid of" Ds all together.

    ReplyDelete
  2. Jenn, You are absolutely right. It seems that you and I are not the only one's who share this thought. I posted the same thing on BBC Ds support board and the feelings are the same throughout. The common theme is that there is not enough education period. If the resources were available to everyone, either pre-testing or even post testing, while the numbers may not change dramatically regarding termination, at least I would personally be more comfortable in understanding why. Not left to assume it was because people were not able to make an informed decision as to how they should proceed. The saddest day was when I received a private message from a distraught woman who told me that she had terminated her pregnancy (Confirmed Trisomy 21) and was now regretting it. She fears that she will be judged harshly by powers above for the decision and after reading blogs like mine, and now doing research, she realizes that if she had done that reserach before, she wouldn't have terminated. She further went on to explain if she became pregnant with a baby who had Ds, she would not terminate this time around. When I asked her what made her change her mind, she said the first time around, she couldn't do research on her own because she was too emotional and they offered her a termination. In her state of confusion and emotions, she chose termination. She feels that her regret now is the price she paid along with a possibility of being punished by god.
    This is the reason why I worry so much about this test, and more so the lack of education and resources as an offer rather then simply termination by doctors.

    Here is a link to the comments made by the many people on the Baby Centre Down syndrome Group: http://community.babycenter.com/post/a26004619/about_the_new_prenatal_testing_-_diagnosis_by_blood_test....?cpg=2&csi=2282661498&pd=1

    I am grateful for your comment and perhaps rather then my only musing about the subject, I can be part of a greater good by putting something together in Canada regarding education as is mentioned taking place in the USA (through the BBC thread I posted).

    ReplyDelete

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